Kevin E. Brigle, PhD, NP, has been a nurse practitioner at the Massey Comprehensive Cancer Center at Virginia Commonwealth University since 2000, where he specializes in managing and educating patients with plasma cell disorders. Dr. Brigle is an active member of the IMF Nurse Leadership Board, contributing to the advancement of patient care through numerous publications and presentations. His expertise plays a pivotal role in the ongoing care of patients and best practices in the treatment of hematologic malignancies.
As a nurse and a member of the IMF’s Nurse Leadership Board, I would like to provide you with some insight on how to build a support network as you navigate multiple myeloma.
What Is a Support Network?
A support network is simply a group of people that can assist you during times of need. While some patients have an obvious care partner who handles most of the support needs, every patient will likely rely on a team of helpers on occasion.
A support network can provide meals, transportation, pet care, emotional support, or help with many other activities of daily life. Research shows that social support is “protective,” meaning that people with a more robust network tend to have better health and a lower risk for premature death. Being able to rely on a support network lessens the burden.
Yet, an often-underappreciated aspect of the support network is its role in improving patient adherence to treatment plans. The support team, including family, friends, and healthcare professionals, plays a crucial role in ensuring that patients stay on track with their medications, appointments, and lifestyle changes. They can remind patients of medication schedules, accompany them to medical appointments, motivate them, and provide encouragement.
How Can You Build Your Support Network?
- Identify people in your social network. To do so, include family members, friends, neighbors, and acquaintances. These people may have shared interests, such as work, worship, hobbies, volunteering, or support groups. Remember, even people at a distance can offer help or may be able to travel to be with you. For example, perhaps someone can assist by coordinating your support network. They may use technology tools like Caring Bridge, ChemoCars, or Mealtrain.com, even from a distance.
- Make a list of your support needs and don’t be afraid to share them! What kind of help do you need? A listening ear, a ride to medical appointments, or help with activities of daily living like cooking, laundry, or yard work? Do you need extra help during a stem cell transplant, CAR-T, or bispecific antibody therapy? Remind family members to discuss Family Medical Leave (FMLA) with their employer if they need to assist you.
- Consider professional or commercial services to fill in the gaps. Counseling, nutrition, laundry, yard work, or grocery delivery services may be helpful. Speak with your insurance or Medicare Advantage plan to understand your coverage for professional services. Also, check with the pharmaceutical company that makes your therapy; many offer patient assistance programs.
Remember: Myeloma is not a sprint; it’s a marathon. You can build your support network over time. Reach out to the IMF about joining a support group for more strategies. Learn about IMF support groups here. If you don’t have a primary care partner, check out IMF’s “Solo & Strong” support group. Finally, be sure to Download the Tip Card: Building Your Support Network.
As always, the IMF urges you to discuss all medical issues with your doctor. Explore this website for more information or contact the IMF’s InfoLine team at 1-800-452-CURE (2873) or [email protected].
